Living with pleural effusions

In October I was diagnosed with pleural effusions in both lungs, liver cancer, lung cancer. Pleurodisis done on the right and a rocket drain fitted on the left lung. Breathless still an issue. Draining 3 times a week on average 450ml. I’m 51 and feel completely trapped as I can’t get away from it! Got a thoracic appointment Friday to discuss the drain etc. Feel like I can’t live with this both the drain and diagnoses. Can’t work anymore and feel like my life has come to a standstill. Not a great talker but need someone who gets it. HELP

Hi scrummy
I have a similar diagnosis to you - diagnosed 2 years ago. It is completely overwhelming being given that diagnosis and also having to deal with the chest drain. Give yourself time to adjust and try not to think ahead - I could only think a few weeks ahead initially now I do make plans in 3 months stages (around scans!). How long have you had your drain fitted? Have you or someone in your family/friend been taught how to care for the drain I found once my husband and I took care of the drain ourselves I felt more in control and gained confidence and freedom which allowed me to enjoy lots of holiday’s abroad. What treatment are you on chemotherapy and hormone trestment (if you are hormone positive ) can help dry up the fluid so you may find you won’t need to drain as often I went down to once a week which is more manageable. 10 months after having my drain I felt well enough to return to work… I did used to hate doing the drain as it made me feel an invalid but once it was done in would get on with my thing and forget about it and it soon just became part of my daily routine you learn to find a new norm - that being said it is so hard letting go of some of the old. I had the drain for 18 months. Make nice little plans like going for coffee with friends so you have things to look forward to may help.
Hugs Sarah x

Sarah Lee thank you for your response. It is very difficult. I had my drain fitted mid december due to the amount of fluid build up. Also have multiple blood clots so inject daily. I’m on Letroze, Palbociclib, Zoladex injection monthly. I was only told last week that it is in the lungs also. This was by a general doc in A E as he printed of the histology report from 12/12/18 that had not been shared with us All a bit of a mess. The lung is also complicated by the fact that they created a pneumothorax when they put the drain in and it is partially collapsed? A “tethered lung” has been mentioned a number of times. Told I can’t fly ? Will know more Friday after meeting with the thoracic team. You sound so positive ? There’s hope to get rid of the drain if you managed it. Glad to hear you have a new normal. I appreciate your quick response to my plea. If it wasn’t for the drain and breathlessness I would probably have the strength to manage the liver / lung cancer / lung clots etcetera. I’m on my second cycle of the oral chemo and as you say it may help reduce the amount. The district nurse comes every other day to do the drainagage. I am not confident enough yet to do the draining yet… Thanks and Hugs xx

I do want to smile again Funnyface. I thought I was strong and a fighter but this has floored me. I thought I’d beat it first time so feel very angry and resentful that it’s back! Just don’t know what the future holds…Hugs xx

Your right Vicky and I understand the anger you must be feeling especially around family. I very much doubt I will be returning to work. Been signed off since October when I got this bombshell of a diagnoses. So angry and becoming very tired of it. I want to rant constantly about the unfairness of it all!! Not in a positive place but this may change. You sound positive even with everything you are having to cope with. I’m hoping for positive news on Friday after a meeting with the thoracic team. That would give me a lift. Thanks Vicky xxxx

Wow you have gone through so much Funnyface it gives me hope. We are all so different yet have this common bond. Cancer absolutely sucks !! I will be thinking about you as I continue my treatment. Hugs xx

Scrummy you really are going through the mill - I really hope you start to feel better soon and your treatment has positive results for you. I have always been a positive person trying to look for solutions to problems but I was very unwell at the time my drain was fitted and bedridden for 2 weeks that was a very low dark time for me as I thought there was no way back and I was on a slippery slope. It is far easier to be positive when you feel physically well. As soon as I felt physically better I wanted to make the most of every moment!?. Keep hope and faith that things will improve with treatment. Take care sarah x

Vicky yes I can identify with what you said about family - for me that is the most harrowing heartbreaking part of all this seeing the worry and concern on my loved ones every time I cough. You seem to have adjusted to life with the drain hope your treatment has good results.
Funny face you really are inspirational keep smiling?.
Best wishes Sarah x

Thank you Sarah and everyone ? Hope and Faith will be the mantra. At least I know that I’m not alone thank to you all xx

Hi, this is my first time posting, I am really suffering with breathlessness and think it may be pleural effusions, but my oncologist hasn’t mentioned this. Does the drain help with the breathlessness as right now I am totally struggling to do anything, and not sure how to get through each day any more. I do try and plan nice things, and think positively for the future, but right now it is really hard. Any advice would be amazing. I don’t know anyone going through this, so I am hoping joining and posting in these forums will help.

I was diagnosed in Jan with secondaries in my bones and lungs, so still in some shock over it all. Am on letrozole and ribciclib, but this doesn’t seem to be working, but maybe 2 cycles isn’t enough.